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Joined: May 2013
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ChrisN Offline OP
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Posts: 134
As the title says, 18 months post. I owe SOOO many people so much...I would love to share a story of a very positive outcome with whoever will listen!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: May 2013
Posts: 10
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Posts: 10
Go! There's never enough good news!


42yr male, Dx jan2013 SCC left tongue stage 3, half glossectomy w/thigh tissue flap and left neck dissection jan/feb, 35 IMRT and 3 cisplatin apr/may, PEG in late March/out early June, pneumonia twice since tx began. No tobacco, HPV-. Now have painful Lymphedema in face/neck...keeping my chins up!
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
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Posts: 1,024
Fabulous news Chris. Simply wonderful.
Yep. Tell us your survival story.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Dec 2003
Posts: 2,606
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Welcome and glad you survived the storms last night. I am a bit east of you in Murphy/Plano. Please do share your story. Never enough good stories to cheer us all up!

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: May 2013
Posts: 134
ChrisN Offline OP
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Joined: May 2013
Posts: 134
I wrote this right after
www.iwishihadbetternews.blogspot.com


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: Jun 2007
Posts: 10,507
Likes: 2
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
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Welcome to OCF! Congrats on being 18 months post tx. Best wishes with your continuing recovery.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Posts: 2,606
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[quote=ChrisN]I wrote this right after
www.iwishihadbetternews.blogspot.com [/quote]

I enjoyed it Chris. I would add yes you are incredible to have gone through what you did. Nothing easy about it. I take it you probably went to Baylor for care? We have to hit the food trucks first in Fort Worth and then Klyde Warren Deck Park in Dallas!

Thanks for sharing. Are you getting therapy for your neck. Regular massage will help a lot. Glad you are here to talk about it.

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
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Chris,

The shock you mentioned in your blog could easily be something called Lhermitte's sign. It is common with platinum based chemo protocols. I still have it almost 10 years later but only when looking down while walking down stairs. You might want to get a home blood pressure device and monitor that sitting and standing. If it isn't blood pressure that made you faint you also might want to have a Doppler on your carotids. They tend to get damaged by radiation and it can be very bad if there is any restriction. Similarly your LDL cholesterol should stay below 100 for life. Any cholesterol plaque buildup in the carotid that is compromised by radiation can result in a stroke.

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: May 2013
Posts: 134
ChrisN Offline OP
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2013
Posts: 134
I received treatment at las colinas cancer center. Amazing folks!

The nerve thing was definitely L'Hermittes. Still have it every now and then but nowhere near as bad as before. As to the cholesterol thing...I used to be on Lipitor before cancer. Constant muscle soreness that I attributed to working out like a madman. Quit Lipitor. No more muscle soreness. Still lift like a madman.

Right before I got sick I was running around 30 miles a week and eating very close to a perfect diet. I got cancer anyway. So, I still run. I still watch my diet. But every now and then I have a beer. Sometimes I have cheese enchiladas. If I learned anything it's that everyone passes. Even vegans. They just wish they'd had a steak beforehand.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Hey welcome!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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